Kingshuk K. Sinha, PhD (Department Chair and Mosaic Company-Jim Prokopanko Professor of Corporate Responsibility Supply Chain and Operations Department, Carlson School of Management, University of Minnesota)
This post is part of a series on how patients are creating the future of medicine. The introduction to the series is available here, and all posts in the series are available here.
While the promise and potential of precision medicine are clear, delivering on that promise and making precision medicine accessible to all patients will require clinical adoption and a reliable and responsible supply chain. We already know this is a big problem in pharmacogenomics technology; the science is advancing rapidly, but clinical adoption is lagging. While Big Data can be a powerful tool for health care – whether it be an individual’s whole genome or an online aggregation of information from many patients with a particular disease – building implementation pathways to analyze and use the data to support clinical decision making is crucial. All of the data in the world doesn’t mean much if we can’t ensure that the development of precision medicine is linked with the efficient, safe, and equitable delivery of precision medicine.
Effective implementation means addressing the stark realities of health disparities. Leveraging citizen science to develop and deliver precision medicine has the potential to reduce those disparities. Citizen science complements more traditional investigator-driven scientific research and engages amateur and non-professional scientists, including patients, patients’ families, and communities across socio-economic strata as well as country boundaries.
In my work on supply chain problems, I see exciting examples of patients and their families developing medical devices and other innovations to meet their own health needs. Tal Golesworthy is an engineer with Marfan syndrome who created a Personalized External Aortic Root Support (PEARS), “a personalized sleeve [fabricated from medical-grade mesh] that is stitched snugly around the enlarged vessel, providing structural support and preventing it from growing any bigger.” (Smitha Mundasad, The Engineer Who Fixed His Own Heart and Others Too. BBC News, Nov. 20, 2013). This is only one of many inspiring examples. (See also Pedro Oliveira et al., Innovation by Patients with Rare Diseases and Chronic Needs. Orphanet Journal of Rare Diseases 10:41 (2015)).
The ultimate promise of precision medicine is to better serve not only individual patients, but entire communities that have long faced serious health disparities. Building a supply chain of precision medicine to deliver on the promise – especially in historically underserved communities – is the biggest challenge we face. Building capacity, a reliable supply chain, responsive governance, and means of patient and community control will be crucial.
Thanks Prof. Sinha for this very interesting article.
At Patient Innovation (an open, global and non-profit online platform and community dedicated to the sharing of solutions developed by individuals afflicted with a health disorder, as well as by their caregivers) over 700 innovations developed by patients/caregivers were submitted from a community of over 50.000 users from the 5 continents. Check it out https://patient-innovation.com 🙂